| Previous Section | Index | Home Page |
I am not sure about who the trusted adult is supposed to be, but the guidance note makes specific reference to the issue that the hon. Lady has raised and I have campaigned for.
Towards the end of my contribution, I shall speak about examples of good practice in my constituency, but I say now that not all areas have that key worker—that trusted person. Yet such provision is so important to families with autistic children.
Mrs. Sharon Hodgson (Gateshead, East and Washington, West) (Lab): I am listening with great interest to my hon. Friend’s comments. I am sure that other hon. Members would find them equally interesting if only they were listening. This is a serious debate, but the House seems to be getting rather restless and Members may not be paying the attention that they should to this serious issue, especially given that somebody is speaking about it in such detail.
Mrs. Humble: I thank my hon. Friend for her comments and I shall continue to draw attention to the importance of the Bill, even if some people are no longer interested in it.
I welcome the Department of Health announcement in May last year of the £200,000 for research into the process of transition for autistic young people. That research focused on young people’s experiences, including their mental health needs, social care and housing needs, further education needs, opportunities for leisure and access to transport, and the ease of their access to services.
I ask the Minister also to consider the impact of different funding arrangements on the choices that local authorities sometimes make about the provision of services for people with autism. I ask because I know of some problems for young people who are in specialist residential provision. They usually stay in such provision until they are 19. However, given the split between children’s and adults’ services, they are sometimes asked to leave the specialist provision, in which they have often done well, when they reach 18. Their situation is then taken over by adult services, which do not include similar specialist provision for them. We need to look at who pays for the continuation of service during that transition stage. We must make sure that if the young person still needs education once the budget of the children’s department has been used to deliver education until 18, the adult services budget is allowed to deliver that education so that there is continuity during the run-in to adult services.
There is also an issue of placement in adult services. If an adult with autism is placed in their own tenancy, supported by care workers, they will have access to housing benefit and a series of welfare benefits that reduce the cost to the local authority. If they are placed in a specialist residential provision, they do not have similar access to the range of benefits. I hope that the needs of the individual will come first, not money. Will the Minister consider that point? Transition arrangements can be very difficult. Sadly, all too often adults with autism are expected to fit into existing provision, but they cannot do that. They may have the external characteristics of many people with learning disabilities or mental health problems, but autism is different, and so the response has to be different. That is why we need to ensure that there is more specific provision for people
with autism. I recognise that some individuals, whether children or adults, can fit into a more mainstream provision; indeed, many can go to work. However, those at the more severe end of the spectrum need their particular needs to be properly addressed. That is why local strategic planning is essential. There are incentives in the Government’s document, “Aiming High for Disabled Children”; we have to aim high for children with autism.
I would welcome comments from the Minister on the commissioning guidance that he is due to publish in April. We need to ensure that we achieve the outcomes of the Bill through new regulations, which will state that local authorities and their partners have to have regard to the population of disabled children, including children with autism, when drawing up their children and young people’s plan. What will that mean in practice? For adults as well as children, the commissioning guidance will be vital in ensuring that the outcomes that we all want are put into practice.
Let me say a few words about good practice. The hon. Member for Ribble Valley (Mr. Evans) referred to a school in his constituency, Hillside school, which serves children from Lancashire and elsewhere. I visited that school, many years ago now, and I know what good work it does. Lancashire county council has a whole series of initiatives, including an under-fives autism programme, the Stone Hey unit attached to Broadfield special school, support for parents through an early bird programme, and a Portage scheme, which can help families with children with autism. I also see good practice in Blackpool, which has a long-standing complex disabilities team who now liaise much more closely with the child and adolescent mental health services. The team has four members, who are trained in an autism diagnostic schedule. They train teachers and help parents. They work closely in the community in a multi-disciplinary way, including joint working with Connexions and the adult health services in Blackpool to provide a youth service for children with ASDs. They have a youth club for young people with Asperger’s syndrome.
Things are happening; the trouble is that they are not happening everywhere. I support the Bill, because we are all on the same side in wanting to improve services. I look forward to the Minister’s comments and the reassurances that he can give us on the way forward. We are all, I hope, practical politicians, and we want to put in practice the things that we have been debating. I look forward to the advice that he can give us on how best to proceed.
1 pm
John Bercow (Buckingham) (Con): I start by congratulating my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan) on introducing the Bill, and on the way in which she spoke this morning—eloquently, sincerely, knowledgeably, movingly and with the legendary courtesy for which I think I can safely say she is renowned in all parts of the House. I would like to echo, too, the tribute that she and others have rightly paid to the National Autistic Society, TreeHouse and the miscellany of other organisations—13, I think—that form part of the coalition to drive forward the Bill.
My right hon. Friend the Member for West Dorset (Mr. Letwin), in his incisive fashion, made a completely unanswerable case for the Bill to go into Committee.
For the avoidance of doubt, I say to the Minister of State with responsibility for health and social care, whose integrity and commitment he knows I do not doubt for a moment, that the reason we need these measures in legislative form is simply stated. We are talking about a minority of people. They are an important minority and an increasingly articulately represented minority, but a minority nevertheless. Unless there is statutory provision for their entitlements, the danger is that, inadvertently if not calculatedly, because of all the other priorities of local, national, statutory and voluntary agencies, the interests and needs of the autistic child, young person or adult will tend overwhelmingly to be either relegated or ignored. That is why, in the absence of a critical mass of such people to trigger change on a regular basis, we need to take the opportunity to proceed with the Bill and to extract a series of legislative commitments. That is the statutory fail-safe that the autistic community seeks and is entitled to receive.
I want to be brief, and specifically to pose a series of questions to the Minister, with whom I have engaged over a long period on issues of this kind, and in whose answers I am profoundly interested. First, the Minister has said that the Government will commit £200,000 from the transition support programme to the funding of research into transition from childhood to adult services for people on the autistic spectrum. Will the Minister today guarantee in terms that that £200,000 will be explicitly ring-fenced for that purpose and that purpose alone? Would he be good enough to tell me and the House when the money will be made available, through whom it will be channelled, and what assessment of the nature, extent and results of the work will be made?
Secondly, the issue of training has rightly been addressed by the Minister and his hon. Friend the Under-Secretary of State for Children, Schools and Families. He will know that in practice it has often been difficult to get explicit commitments on particular training programmes. Will the Minister guarantee to meet the professional bodies to advise on how, in practice, the training commitment can be taken forward, and will he bear in mind that there is a difference between saying that there are opportunities for, and an availability of, training on the one hand, and saying that in practice the children’s work force, the health service work force and the other individuals who are relevant to delivering better services will attend training courses with the back-up funding of staff required to translate the aspiration for training into the reality we seek?
Thirdly, the draft strategy in April and the intended final autism strategy in December are an ambitious project. I do not sniff at it, but it is an ambitious project with a tight time scale. Can the Minister assure the House today that the time scale is not such as to inhibit the strategy, or to put it another way, can he confirm that the strategy will be absolutely comprehensive, so that we do not go full circle on the issue?
Fourthly, I ask the Minister in all courtesy to make one other commitment that would offer some reassurance. Will he undertake in his contribution to answer every point that has been made by a right hon. or hon. Member today, and in so far as time prevents him doing so, would he be good enough to undertake to write to Members whose questions or challenges he did not answer, and to place a copy of what I am sure will be an illuminating and comprehensive reply in the Library?
I conclude by saying that there are two reasons why we have to address these issues, rather in the superb manner that my hon. Friend the Member for Chesham and Amersham did, and do so in legislation. First, it says something important about the political DNA of our society if we are prepared to commit to a vulnerable section of the population whose needs and interests have for too long, under successive Governments, been inadequately recognised. Secondly, it is not just a matter of being nice, decent and compassionate. It is also a matter of the authentic self-interest of UK plc. If we can address the problems, deficits, weaknesses and denials of opportunity from which people on the autism spectrum suffer, we will be playing into many other agendas as well. Tackling those issues is relevant to the fight against antisocial behaviour and the challenge of improving mental health. It is important to the objective of securing better educational outcomes and bolstering the qualifications, training and expertise of the work force. It is profoundly relevant to the future prosperity of UK plc in an age in which a job for life is a relic of the past and the premium placed on knowledge, skills, practicality and the ability to communicate and engage is greater than ever before. I look forward with interest and respect to what I am sure will be a comprehensive response from the Minister.
1.6 pm
Mrs. Sharon Hodgson (Gateshead, East and Washington, West) (Lab): I am very pleased to follow the hon. Member for Buckingham (John Bercow), although his speech was rather shorter than I would have liked. I enjoy his speeches, but I totally understand why he kept his remarks short. I do not intend to speak at great length, but I am a sponsor of the Bill, and anybody who knows me will know that I take a great interest in special educational needs and disability. I have therefore prepared a thorough contribution, and I will resent any accusations that I am playing Friday games, which I am certainly not.
I am delighted to be able to speak in the debate, and I offer my warmest congratulations to the hon. Member for Chesham and Amersham (Mrs. Gillan) on her success in the ballot and, more importantly, on her excellent choice of topic for her private Member’s Bill. I was lucky enough to find myself drawn second in the ballot last year, and I know not only how instantaneously popular a Member who is successful in the ballot becomes but the deluge of work that accompanies the privilege.
The hon. Lady might agree that choosing a Bill is difficult. I see it as a choice between plaudits and pragmatism, although that is not to say that the two are mutually exclusive. She has shown great skill and endeavour in achieving what I believe to be an excellent package of measures to support those in our society with autism, and I congratulate her on doing so. Incidentally, I watched her on “Question Time” last night, and I thought that she looked remarkably perky this morning considering the busy schedule that she has had this week. I commend her for her warm and moving comments on that programme about Jade Goody, with which I concur entirely.
When given the opportunity to introduce a private Member’s Bill, it is easy to shoot for the stars, but success is often found when our feet remain a bit closer to the ground. We all come into politics to try to make a
difference, and the consequences of the hon. Lady’s work will have a positive impact on thousands of lives and families up and down the country in the years to come.
The case for more action on autism is clear-cut and compelling. It is a condition that affects how people relate to the world around them, as numerous Members have said. People with autism can find it difficult to empathise and communicate with others. Communication, interaction and imagination can all be difficult. It can also have other behavioural consequences such as a love of routines as well as learning disabilities. It is understandable that society is lagging behind in fully supporting and including those with autism, given that they often find it difficult to express for themselves the steps that would improve their quality of life and access to wider opportunities.
Public understanding has been stinted because autism exists on a spectrum and is manifested in varying degrees. Today marks acknowledgement of the lack of information about autism and the lack of awareness by schools, the Government and members of the public. No studies have been carried out on adults to ascertain the prevalence of autism. The only existing estimates are worked out from the 2001 census. As part of the National Autistic Society’s “I Exist” campaign, I contacted my local authorities to find out how many adults with autism lived in each of them. One did not hold such information and the other could tell me only how many attended a specialist day centre—fewer than 20, if I remember correctly. That is obviously not representative of the 1 per cent. of society that we understand to be autistic.
We should not—thanks to today’s debate, we cannot—downplay the wider impact of autism. Approximately 500,000 people are estimated to have autism and around 2.3 million people are affected by it. They include family members and professionals, who are involved in the care of people with autism. Yet a deficiency remains in the information that the powers that be hold about the prevalence of autism among adults and children and its effects on them.
When I was researching my private Member’s Bill, the autism charity, TreeHouse, researched a series of parliamentary questions from the past 10 years. The results show that 551 questions were asked about autism, relating mostly to health and education. The questions reflect the consensus about the great need for diagnosis, research, treatment and data collection. The report recommends that the Government consider collecting information centrally to gain an understanding of local authorities’ needs. Although the report was originally published to support the aims of my private Member’s Bill—now the Special Educational Needs (Information) Act 2008—it is clear from the National Autistic Society’s “I Exist” campaign that concerns remain about the quality and quantity of the data that are available and their use to benefit those on the autistic spectrum.
Lack of information has been highlighted through a difficulty in diagnosis in schools. Forty per cent. of all children with autism wait more than three years for a clear diagnosis. Boys are four times more likely to develop autism than girls. The condition can also lead to behavioural difficulties, and 25 per cent. of children with an autistic spectrum disorder have been excluded from school at least once.
More than 40 per cent. of children with autism have been bullied at school. According to an Office for National Statistics 2005 study, 42 per cent. of children with autism have no friends, compared with only 1 per cent. of other children. Recognition of those saddening and shocking statistics has already led to action by the Department for Children, Schools and Families.
In May 2008, the Department published guidance on how to prevent and tackle the bullying of children with special educational needs and disabilities. The National Autistic Society was consulted about developing the guidance, and one of the case studies focuses on an autistic pupil being provoked by bullies and how a school successfully responded to that.
The Department funds the Anti-Bullying Alliance and the national strategies to work with local authorities and schools to ensure that the guidance is effectively implemented. It is also producing a DVD to be launched in 2009 for use in schools to show why pupils should not bully disabled peers. I know that the Department is already working with the National Autistic Society, Mencap and other disability groups to examine the characteristics of young people who are bullied, and it will publish a report in the autumn.
The existing statistics also reveal an urgent need to focus on training staff in our schools to identify children with autism accurately. I was pleased to secure a commitment from Ministers to undertake a review of the effectiveness of the inclusion development programme in upskilling teachers to support the needs of SEN pupils. The university of Warwick will independently evaluate the use of the IDP materials, reporting in 2011, with interim reports in the meantime, and I welcome that action from the Government, which shows a commitment to finding out what is working and what is not.
In addition, in June 2008, the Training and Development Agency launched a comprehensive training resource for providers of undergraduate primary initial teacher training. It included 18 taught sessions, including one specifically focused on recognising and supporting children with autism. This summer, the TDA will launch a resource for secondary initial teacher training, which will include a taught session on autism and self-study tasks for primary and secondary postgraduate certificate in education courses covering the same ground. A similar approach will be taken in materials for newly qualified teachers, which are due out next January. Work is under way, therefore, but we all agree that it is not enough.
A lack of public knowledge about autism has led to a general misunderstanding of the condition, which has often been left aside. Parents and people with autism are frequently confronted with a lack of understanding of autism. Improved data collection would lead to a better understanding among organisations, educational services and local authorities. Such information would enable a stronger evidence base for long-term planning and help to allay concerns that the existing approach is too short-sighted.
| Next Section | Index | Home Page |